Safe Haven

Jerry and I, plus several staff members and 16 Ranchers with Down syndrome just returned from Indianapolis where we attended the annual convention of the National Down Syndrome Congress.

Jerry and I went in a few days early in order to visit a sister village community in Ohio, about an hour away.  It's called Safe Haven Farms, and is the brainchild of Dennis and Ann Rogers, who have a 34-year-old daughter with severe autism.

Safe Haven Farms could easily double as a movie set, with its beautiful buildings nestled in the gentle green hills, gardens, ponds with ducks on parade, grazing llamas and miniature horses. 

As we drove in the front gate, a tall, very thin young man planted himself right in the middle of the narrow lane.  He was accompanied by a staff member, who attempted in vain to convince him to move out of our way so we could drive in.  We waved at her to indicate she shouldn't stress about the situation; we were in no big hurry.

Several minutes later the young man moved of his own accord and the pair continued their journey to wherever they were going.  All he needed was time to make up his own mind about the situation.

Dennis and Ann met us and gave us the royal tour.  We swapped stories as we went along and at one point, as we were headed to the residence cottages Ann said, "I'll just stop in and see how our girl is doing today.  She's been having a hard time of it the last few days."  I offered to accompany her and received an instantaneous and emphatic "No!"  I got the message and continued on with Dennis and Jerry.

Dennis showed us homes customized for adults on the severe arc of the autism spectrum--painted flowers and murals on the walls instead of mirrors or pictures, TVs completely encased in wooden cabinets that prevented their being picked up and thrown.  No glass.  Shades encased within double paned safety-glass windows and operated by a lever to adjust the amount of light coming in.  Plus many similar accommodations.  It sounds stark, but the homes look like what they are--homes.

Needless to say, Safe Haven's staffing ration is quite a bit higher than ours, one-on-one to two and sometimes three-on-one.  Ohio has a regulation that does not permit the landlord--individual or corporate--to provide the programming for people with intellectual disabilities, so all program and staffing is handled by Bittersweet Farms, another provider.

When Ann and Dennis despaired over ever finding a living situation suitable for their daughter after she left high school, after several spectacular failures, they decided in the mid 2010's to take on the task themselves.  They understood as few others the challenges involved in caring for a son or daughter on the severely-affected end of the spectrum.

They were encouraged by government agencies, and why wouldn't they be?  Here were two incredibly energetic, experienced people ready to devote their lives and their fortune marshalling resources to create a place where the most difficult to serve men and women, like their daughter, could live and grow.  (And incidentally, in doing so, they would save the taxpayers of the US and of Ohio millions of dollars and provide the best care possible. two eminently worthy goals!)

Well, that was then.  The day before our visit the state head of the Department of Disabilities visited to gather information and provide feedback concerning the rules promulgated by the Centers for Medicaid and Medicare Services of the federal government. 

These are the rules that say: No segregated environment.  No one-disability communities.  No rural villages.  No names like "Safe Haven."  (Heaven forfend!  Do they prefer "Hell's Kitchen?")

And for that matter, no in-ground swimming pool, a much-desired item for the Farm. 

Why not?  The Farmers love to be in the water.  Several are good swimmers, but even those that don't swim love the feel of the water on their skin.  (My theory is that it's because the water helps them know where they leave off and the rest of the world begins.)

But...having your own swimming pool is "institutional," and you should really be taking the Farmers to the nearest community pool to swim.

Now the following are purely my own observations, and I ask, in what universe are these people living?  Do they have any understanding at all of the challenges involved in providing optimal care for adults on this part of the spectrum?  I cannot believe that they do. 

I met a very well known advocate for people on the spectrum, who is herself on the spectrum.  She is rightly famous, and lauded for her many accomplishments.  At the time I was accompanied by one of our Ranchers, a man on the spectrum who struggles tremendously with anxiety, Tourette's, and OCD.  He knew of her work and wanted to meet her.

This man picked out Down Home Ranch as his home many years ago, long before we had an opening for him.  (In fact, when he learned he could not come right away after doing his residency trial, he filled a jug with water and ran away, determined to live here at the Ranch even if he had to do it in the woods!). 

This women dressed me down then and there, saying that he should be living on his own, he was obviously smart and capable, and he had no reason to be living sequestered out in the country somewhere on a "segregated" ranch. 

But what about the fact that he loves the Ranch?  He can go fishing whenever he wants.  He grows his own garden and takes care of it by himself.  He loves nature and feels comforted being in the outdoors.  Does he get a choice in this matter?

Village communities all over the country are organizing to address this rule.  We are not saying everyone should live in a village community. 

But why are the advocates so determined that nobody should?

Catching up at the Ranch

Whoa...life has been wild since we got back from our trip a few weeks ago.

Rebekah and the Dude

First of all, the Dude.  He finally seems to be feeling pretty good.  He's filled out and is eating well.  Rebekah and I fuss over him and the bottle duties. 

Marci arranged for members of her church community to come over last Thursday to stuff stockings for the Food Pantry Christmas stockings.  I'd forgotten they were coming when Jerry came over to tell me that mayhem had broken out in the Pavilion.  He tried to describe the scene but I had to see for myself, so over I went.

Michael and John zap each other with the zapping hands

This was about 8:30 in the evening.  Ranchers were running around zapping one another with little rubberized hands that snapped like rubber bands, but they didn't hurt.  The stockings were already stuffed, and it was cut-loose time.  Several hands wound up stuck to the ceiling way high up in the dining room.  Hopefully they'll dry out and fall off. 

Last Friday morning at the staff meeting Jerry started off, as he usually does, with some lamer-than-usual jokes.  I mean,  really lame jokes.  After appropriate groans we got on with the business at hand.

Now Jerry has a lot of trouble ending things on time and he won't wear a watch or even look at the clocks on the wall there for all to see. So he has deputized Casey as the sergeant-at-arms  of staff meetings.  It's her job to give the five-minute warning.  A finger slicing sideways across the neck is the signal that the five minutes is up (I think we got that out of some management book...)

This day, however, before Casey could give the signal, we noticed Christopher peering in through the little window in the door.  He indicated that he wanted to come in and Casey waved at him to come on.  Once in the room, he settled down next to Jerry, who turned to him and asked, "What's happening, Chris?"

"Daughter," Chris said, frowning and pointing out toward the hallway at our daughter Kelly, his best friend and buddy.

"What about Daughter?" asked Jerry.

"Bad jokes!" exclaimed Chris.  I lay my head on the table and moaned, "Oh no, it's genetic!"

Saturday Fr. John brought 20 or so parishioners over from St. Francis Episcopal in College Station for a tour of the Ranch.  Jerry took them on a wandering hay ride to see the sights and we all had barbecue with the Ranchers in the Pavilion.

Later that day, Jim's friends Judy and her granddaughter Natalie arrived and we all decorated Timothy House, where Jim now lives, for the holidays.  Jim's our newest Rancher and he's loving his new life at the Ranch.  I wanted Judy and Natalie to meet the guys of Barnabas House, where Jim hangs out a lot.

I  don't know what happened, but I stumbled on the sidewalk and in trying to regain my footing launched myself through the air, landing across the curb between the sidewalk and the porch.  I am now decorated in blacks and blues  from chest to toe, and given the violence of the impact, count myself lucky that the only thing broken was my camera.


Fr. John after services last Sunday



A few Tylenols later, we all left--as in all of us--to all have dinner in Elgin at the City Cafe, watch the Christmas parade and attend a reception at the home of Forest and Cheryll Dennis, yard-decorators extraordinaire, who were hosting a reception for nationally-recognized singer Judy Pancoast, composer of The House on Christmas Street.

Sunday morning I didn't even try to sing with the choir, since it hurt to breathe.  We came back to the Ranch after church and I spent the afternoon cleaning out my office.

When I checked my email there was one from Fr. John titled "TWO exciting days!"  It had an attached photo labled simply "41 Barb and John."   I opened it, and there was Fr. John with President George H.W. Bush and Mrs. Bush.

I asked Fr. John if he'd had any advance notice they were coming and he said the first he knew was when the Secret Service showed up at 9:15.  The Bushes spend a fair amount of time in College Station because the Bush Sr. Presidential Library is there. 

Travis and I taking Sally out for a spin last summer

I do hope things slow down a bit.  I bought a few books on driving a cart and horse, and am itching to get old Sally hitched up for a ride, if and when I can find time.  It's my Christmas project.

Peace.

Taming the wild mustang...grapes, that is

Wolf Meadow

John Stewart, of Kingston Trio fame, wrote a song entitled "July, You're a Woman" that evokes the essence of the month of July, when the trees and shrubs are leafed out and full, the heat has settled in for the duration, and the cicadas and locusts sing night and day. 

This summer we had good rains all through June, so the Ranch is green and the trees in the pecan bottoms are heavy with mustang grape vines and fruit.

Sterling & Charles

Brian declared last evening to be community grape-picking time, so after supper we gathered at the Pavilion and headed down to the bottoms.  The past year has been so rainy, turning the bottoms into a mire, that I had not been down for months.  At the first turn we sank into the cool air that collects among the gigantic native pecans along Yegua creek.

The smell is wet and sweet, like no other place on the Ranch.

Picking in evening light

The evening light slanted through the trees, even though it was only about 7:15, a reminder of how quickly the light changes after the solstice!

Brian had scouted out the locations where the berries were (and the poison ivy wasn't) and stationed our pickers accordingly.  Charles, Diana, Brent, Jerry, and Michael took one locale, and Phil, John, Sterling, Sandy, Natalie, Alan, Julia, and Kara took another.

We laughed about the I Love Lucy episode when Lucy participates in an Italian grape-stomping, with predictable results.  Jerry and Charles got into matters spiritual and we all agreed that next spring we will again have a proper seder meal.

Natalie's proud of her harvest

Phil spent his time perched on a ladder throwing clusters down below, where others picked off the grapes and put them in containers.  Others went for the low-hanging fruit.

Sandy and Sterling pulled on ropes to bring the vines closer to the ground for easier harvest.  Sandy took a tumble.

After I had my pictures, and the light was getting dim, I began walking home.  I could have cut from the meadow we were in to the Village in five minutes, but I elected to walk the long way around--about a mile--for the sheer pleasure of it.

Sandy tumbles down

I could hear the laughter as the grape pickers bantered back and forth as I walked.

Today we'll start making mustang grape jelly, which we haven't made for years.

July's a good month at the Ranch.

Planes, Trains, Buses, Shuttles, Monorails But No Automobiles

We did it. 

Thanks to grants from the Lower Colorado River Authority, parents, and a First Baptist Church of Woodworth, Woodworth, LA, we were able to travel to Walt Disney World for the National Down Syndrome Congress annual meeting and convention, taking 11 residents with Down syndrome to attend the simultaneous Youth and Adults with DS Convention.

I had planned to blog throughout our adventure, which began last Thursday and will be ending with the return of the residents and staff to their homes in about two hours from now after their plane lands in Austin.  However, it turns out that while Disney World may be many wonderful things, it is a crummy place for a convention, especially for--as in our case--people traveling in a large group, or--as in many other cases--young families with small children, strollers, and baby paraphenalia.

We arrived late Thursday evening in the Orlando airport and hit the lobby of our resort hotel, Aruba, about nine.  We had to check in room by room, a process which took about an hour.  The Ranchers were amazingly patient as they entertained themselves and one another as Casey, Phil, Marci, and I figured out all the details.

Finally we had all our key cards and, each clutching a map which made absolutely no sense to us in the dark, boarded a shuttle bus that would take us to our rooms...sort of.

Thirty minutes later we were deposited beside a shuttlebus shelter next to a parking lot next to clusters of two story lodgings, each dragging a heavy suitcase and armloads of other perceived necessities.  The Donner party flashed through my mind as we began trekking through the jungle in the dark, in a direction picked at random, there being no signs, nor signs of life, to guide us toward our proper destinations.

We were to reside in Aruba (where people tend to disppear, as I recall, but I tried not to think about that.)  By now the Ranchers were, quite understandably, becoming vocal about having consumed nothing but a small drink and a Clif bar since lunch at 11:30 that morning.

We wended our way around this building and that, finding numbers affixed to them occasionally.  After another half hour we'd all found our buildings and our rooms and agreed to meet at the foot court across the lake, the lights of which were twinkling merrily over the water.

At 10 after 10 we reached the promised land and snagged some burgers and fries before the concessions closed.  The tab was only about 40% more than it would have been at a prime rib steakhouse, but we were in no position to haggle, or to go anywhere else.

In the morning we met at the pool and laughed at our pickle the night before, because once you could see the layout we saw we'd walked a good five times further than we'd needed to.  We met a young family in the pool with baby Landon, here for his first NDSC conference.

Once we'd all connected, we found our bus stop again and headed for Hollywood Studios Park.  We waited about a half hour for the bus to take us there, which it eventually did.

The park was pretty, but had nothing on Sea World or Fiesta in San Antonio.  We were there principally for the High School Musical review, unlike ten or eleven other patrons of the approximately one million in the park.

We got a good seat on the concrete and settled in.  We were a little concerned, because Kara had staked her entire experience on being able to dance with the cast, something over which we had little or no control.  But Kara did, and she made sure they noticed her enthusiasm and knowledge of all the songs and dance routines.  Before we knew it there she was, stepping out with one of the handsome cast members.  Later Mike and Kristen got a chance to join the troupe too.

We went to lunch at Mama Melrose's Italian Retaurant and I looked forward to mediocre food at eye-popping prices, but I was wrong wrong wrong!  Well, right about the prices actually, but a simple bowl of vegetarian minestrone and a salad were as good as anything I've ever tasted, and that's a fact!

By then I'd had all the fun I could stand, and left the park to go to the conference, where Jerry and I joined a workshop of older parents whose adult kids with Downs had married or were contemplating marriage.  More of that later on in the week.

The fab four--Casey, Phil, Marci and Becca--shepherded the Ranchers to the resort hotel where the conference was being held, which was only about two time zones away from the resort hotel where we were staying (but no problem, a shuttle was never more than 50 minutes away at any given time...)

They got registered for their conference, and Jerry and I went to dinner, which again was pricey but quite out of the ordinary.

That was Friday.

(To be continued)

Praise on the Porch

Thursday evening we heard music coming from across the Village in the direction of Barnabas House, so we drove down to see what was going on.

 

Rebekah was in the front yard with her prayer flags, and Charles and a gaggle of Ranchers with guitars were holding forth on the front porch.  Diana was leading people in song, and Alan was playing drums.

It was great to see Andrew playing his guitar.  He's really quite good, but hasn't played much the past few years.







It was a great scene--a lazy evening with the cicadas thrumming and a joyful noise rising up through the heavy summer air.

Charles blew his shofar, which we were afraid might attract some unwanted wildlife...



He and Diana promised to make it a regular Thursday night gig.

"Sis Was Slow"

Wednesday was our last day to play in Florida.

I stayed home to blog, and Kelly joined the sisters on their last beach run.  We'd planned to go see Toy Story 3 in the afternoon, but everyone was so tired that after a late lunch Carolyn suggested we instead watch Mamma Mia, the sing-a-long version.

Inspired idea!  Kelly eagerly set it up and we all settled in.

We're all singers and knew some or most of the songs.  It was great fun and got me to thinking...Greece is looking very enticing.

Back to reality. 

We'd made reservations for the birthday dinner at  PJ's Seagrille in Boca Grande.  Dinner was fabulous.  We took a break to present the brithday woman with her gift commemorating this milestone birthday--a lovely James Avery hammered ring made up of five loops of silver--representing the five of us gathered to celebrate:  Carolyn's three sisters, her mom, and her daughter.

Alex, Martha's son, had written a card assuring Carolyn she didn't look a day over 42.  We all got real mushy.

A round of coffee and desserts, a short walk on the beach in the moonlight, and home to bed.

Then next morning it was time to face the music.  We said bye to Caitie and Carolyn (and the red Volvo convertible!), who had an early flight (minus the Volvo, alas).  We hit the road at 9:00, got to the airport, turned in the rental car, backtracked home through Atlanta, found my car in the parking lot at San Antonio, dropped off Janny and Martha, and Kelly and I headed back for the Ranch.

I popped in a CD of Selena and was going over the high points of the vacation in my mind.  I'd been so impressed with Kelly.  After getting settled in at the vacation house, she'd pretty much dropped all her insistence on what some folks call "the grooves."  Dinner at 9:00?  No problem.  Lunch at 11:00 or 1:00?  Same.

However, about a third of the way home from the airport she started talking about Yolanda Saldivar, the woman who murdered  Selena .   My heart sank.  We have these conversations frequently.  Kelly knows Saldivar is in prison and will be there for many more years.

We review the facts: Saldivar can't get out, she's no threat to anybody, Selena's parents will miss their daughter forever but they have other children and grandchildren,  Selena's sister and brother are still musicians, etc.

Through Manor and Elgin, Kelly continued to talk about Saldivar, despite my attempts to change the subject.  Finally I asked, "Kelly, do you think Selena would want us to spend all our time thinking and worrying about that awful woman, or do you think she would want us to enjoy the beautiful music she left behind?"

"The music," she replied.

"Yes!" I said.  "Let's listen to Selena and sing along."

A few miles down the road another Selena question began to surface and I cut it off with the sign for "Stop it!"  I was exhausted and could not keep this up.

It took me a few hours, but just before bedtime I realized that Kelly's "grooves" had started to reassert themselves, doubtless in reaction to her growing anxiety about returning home.  I realized that I, too, had been bracing against the return to work, colleagues, friends, expectations, and all the frustrations thereof.

I had emailed Jerry after the first day on vacation that after several hours on the beach, a nap by the pool, and a nice dinner at home with wine, I  felt like warm liquid oozing from room to room.  For a perpetually up-tight person like me, that's as good as it gets. (I tried an "at-home" vacation a few months ago but it was a total bust.  You literally have to "vacate" the premises to get the real thing.)

Home is good, too, but Kelly and I also work here.  Our neighbors are our colleagues, our friends-- and in some cases-- our bosses.  The Ranch may look like paradise to outsiders, but we're a true community, with all that implies.  We're real life, warts and all.

On vacation I'd seen a different, more "normal" side to my daughter than I've ever been privileged to experience before.  The change was so marked it made me wonder: What things happen here at the Ranch that interfere with its expression in our everyday life? 

On the trip I'd taken a copy of a chapter from the book Mental Retardation in the 21st Century, Michael L. Wehmeyer and James R. Patton, eds., Pro-Ed, Austin, TX 78757 (2000).  The chapter is "Social Constructions of Mental Retardation: Impersonal Histories and the Hope for Personal Futures" by J. David Smith. 

Everybody's idea of a beach read!  Actually, I saved it for the flight back.

Smith speaks eloquently about how people with IDDs, while recognized as different, used to have their place in society.  This is true.  One of Jerry's 11 aunts and uncles on his mom's side was Catherine, called "Sis" by the family.

"Sis was slow," Jerry's mom would say.  "Couldn't make it past third grade.  But we always knew she was slow."

But Sis had milked, and picked cotton, and cooked, and married, and raised children and eventually earned the rank of sainthood in the family as she proved herself an able and willing caregiver for members at the end of their lives.

Alas, not much need for milkers and cotton pickers these days.  That was a simpler time and place.  As far as the other things Sis accomplished, would she even be allowed to try today?  Or would she have a label slapped on her by age 3 and an army of social workers, case managers, program directors, and special ed teachers directing her life from that moment on?

Who depends on whom?  I wonder.

We've built a beautiful place here at the Ranch.  Our residents and campers give every evidence of loving it.  Our first criterion for residency has always been: "The prospective resident must actively desire to live at the Ranch and able to demonstrate that desire."  We consistently get rave reviews on our facilities and our programs.  We even get total strangers calling up to compliment us on our Ranchers--their appearance, their manners, their joie de vivre.

The Ranch is supposed to be that simpler time and place.  But is it?  What do the Ranchers really feel?  Deep down, do they know how tight is the grip we maintain on the steering wheel of their lives? 

I suspect they do.

Smith closes his article with this observation:

"...the time is overdue for a fundamental questioning of the concepts, terms, and practices associated with mental retardation.  The millions of people with the myriad of developmental disabilities that have been subsumed under this term deserve this questioning of the manner in which they are being regarded and treated.  A disassembling of the aggregation that mental retardation is may enhance our vision of what it should be."

In simple English, I think he's telling me: "Take away all the labels, the specialists, the therapies, the compliance, the documentation, the endless palavering, YOUR hopes, YOUR dreams, YOUR expectations, YOUR investment in Down Home Ranch.  Put away your notions as a professional, as a parent.  And look at your daughter.  Look at this human being as the person God made her to be, and listen to her very, very, very carefully."

When I started this blog, I had to swallow a big lump in my throat before I could expose my daughter's life in the way I do, but  I decided that more good could come of it than harm. 

I owe it to her in return to pry open my own eyes and perhaps see truths I'd rather not see.

Rancher Camp

Tuesday and today the Ranchers have been training the incoming counseling staff for Ranch Camp.  They do this by being "Campers" for two days, and they take their job very seriously. 

We do, too, even paying them their regular wage to do it.

Everything happens that will happen at regular camp in order to give the camp staff the experience.  Of course, our guys are such old hands at this (almost all began their relationship with Down Home Ranch as campers) it's really easier than getting a brand new--and much larger--group of unknowns each Sunday afternoon, but a rehearsal's a rehearsal, and every bit of experience helps.

First there's check-in--lice check (eeew!), medications turned in, ID bracelet put on.

Then there's all that gear to stow away somewhere, bunks to be picked out and made up, too.

Best of all is the chance to make some new friends.

After everyone's settled in and getting to know one another, it's time to go swimming, do crafts, have dinner and and watch the skits the counselors have been working on all week.

It's fun, but that's not to say some folks don't miss their regular bed and in-room TVs!

Up in the morning, it's time to go fishing.  The stories are good, as usual, and they weren't all about the ones that got away, either!

Later in the morning, there was the nature walk.  Most campers agreed it was a lot like working in Gardens--hot, sticky, and buggy.

In fact, when ask what kinds of wonders were seen on the nature walk, most everybody answered, "Ants."

Sure enough, Michael (below) brought back ants and their project for the day, a deceased caterpillar.

We talk a lot about hydration in the Texas summer heat, and many Ranchers now have "camel packs" strapped to their back. 

Here Sterling gives Kelly a sip of water from his.

Chris takes the stage during the pre-lunch break, giving his famous rendition from the Lion King.

While the Ranchers have been masquerading as campers, direct-care staff has been attending two-days of intensive training.

Tonight after supper, everyone will go home, have a shower in their own bathroom, and settle into their comfy rooms for the night.

Tomorrow, they're off to Morgan's Wonderland for the day, accompanied by students from the Texas State University Department of Recreational Therapy.

Friday, it's back to normal, picking the last of the berries, cleaning up after the horses, and cleaning the buildings to get ready for the real Ranch Camp. 

Of Praise and Promise

Friday I attended a reception given by the Chaparral Women’s Club of Round Rock to award grants to a number of local non-profits.

It was fun meeting the other grantees, and I had one of those moments so satisfying and wonderful they go beyond any emotion you can pin a name on.

At my table, a woman spied my name tag and said, “Oh, you’re from Down Home Ranch! I have to tell you that at the regional Special Olympics games, some friends and I began noticing this one team. There was just something so special about them in the way they treated and supported one another. It was very touching, and I had to find out who they were, and they were from your facility.”

Wow. Every hope and every dream we ever had culminated in that one statement. Why? Because that’s exactly what we have been aiming for all along.

When Kelly was born we asked ourselves where the beloved community would come from that we prayed she would belong to as an adult. We checked out various living situations, and we really just didn’t find it at all except in a very few extraordinary places, and we’ve worked very, very hard over the past 19 years trying to turn Down Home Ranch into it.

I’m far from naïve. The beloved community can, and often does, drive us nuts with frustration. The beauty of it reveals itself shyly, fleetingly—floating by on gossamer wings.

More often, we are plagued and puzzled by its absence, by our inability to get it right. We do live in reality as created by members of the human species.

But at its best, oh my.

Seeing Rebekah welcoming the dawn with prayer flags as praise music boomed out of the living room.

That was it.

Getting together with fellow staff ladies together last Friday evening for a potluck and a chance to share a little of our non-duty lives with one another. Nothing profound—sing a little, eat a lot, pray some, and end the evening watching a DVD of a female comic who had us howling with laughter.

That was it.

And the day after the cruise last year, the president of the Elgin Chamber of Commerce called up to say a man had contacted their office wanting to know “who those fantastic people were on the cruise.” He’d been so impressed with our Ranchers, how they treated one another and other people, and with our staff—how they treated the Ranchers.

That was it.

I first found it at St. George’s Episcopal Church in Austin. There was a reason that Kelly and St. George’s came into our lives at the same time: We had to experience it before we could ever hope to help it come about.

“Faith is the substance of things unseen, the evidence of things hoped for.”

And that is the very foundation of it.

Going to Hell in a Wheelbarrow

“The world is going to hell in a wheelbarrow, and this is not going to do retarded people any good.” Dr. Wolf Wolfensberger, Mental Retardation, February 1994.

I was skimming the current (April 2010) issue of Intellectual and Development al Disabilities: A Journal of Policy, Practices, and Perspectives, the official publication of the American Association on Intellectual and Developmental Disabilities.


Whew! OK, one skims People Magazine. I was doing something else with the Journal.

In any case, when I came to the end of it I saw that Wolf Wolfensberger had a lengthy piece, “How to Comport Ourselves in an Era of Shrinking Resources.” I began reading and promptly felt like I’d been caught in the updraft of an F-6 tornado.

I’ve always admired and respected Wolfensberger. He’s an old-timer on the disability scene, long established by the time our daughter Kelly was born 25 years ago. He pioneered much of the early work examining society’s attitude toward people devalued because of their disabilities, and was one of a handful of people whose work and writings inspired us to build Down Home Ranch.

This current piece qualifies as a true Jeremiad, in the classic meaning of that term. It’s an unflinching analysis of social and economic trends, and of their implications for the lives of traditionally devalued members of society—those who are aged and/or ill, those with mental illness and intellectual disabilities, those who for whatever reason are economically unproductive. It is a prophecy of things to come.

Boiled way down, Wolfensberger’s conclusions are as follows:

1. Our national and world economies are fundamentally unhinged from reality-based principles that would ensure sustainability, with the result that they are in free-fall now and will continue to deteriorate until sane policies are restored;

2. In the historically “wealthy nations” birth rates have fallen so low that the proportion of working people necessary to fund social services, pensions, and other social obligations has fallen to unsustainable levels;

3. In part because of 2, above, social changes in the “wealthy nations” have been trending for decades toward a culture of “death-making,” i.e. solving the problem of the economic drain of unproductive citizens by preventing their birth through abortion (90% in the case of Down syndrome) or hastening their death through euthanasia (soon to be a favored option for us old folks);

4. The implementation of the theories and policies of academic institutions, advocates, and regulatory agencies have been more successful in ensuring the non-productivity of persons with disabilities rather than increasing opportunities for them to be productive;

5. Misuse of the tools of advocacy has led to absurdities in the funding of everything from cancer research to supports for adults with intellectual disabilities, resulting in enormous and indefensible disparities;

6. Traditional family values of thrift, sacrifice, faith, and self-reliance have caved before a culture that encourages debt, obsession with self, and pursuit of materialism;

7. In part because of 5, above, government agencies have assumed ever greater responsibility for meeting needs previously met by families, at far greater cost and with much less efficiency.

Wolfensberger then spells out his proposed remedies, at least insofar as ensuring that some decent level of care survives for people with disabilities. He is clearly not optimistic. He’s been through this before, in 1994, and was branded a lunatic at the time.

However, pretty much everything he predicted 16 years ago has come true, with startling (and depressing) accuracy. His voice resonates with me because I recall in 1984 gently rocking baby Kelly in the autumn sunlight that streamed through the window of the living room of our home in Austin, thinking about…demographics.

I knew where things were headed. That’s another reason we built the Ranch.

Warning: this piece is an equal-opportunity offender. No matter where you place yourself on the political spectrum, you are likely to feel skewered at some point or another.

But if you care about our people I strongly encourage you to read it carefully, think about it deeply, and share it with others.

Because our ability to protect the ones we love will depend on how we respond.

Selena Mania!

In March I chanced to read an article in the Texas Monthly commemorating the 15th anniversary of  the death of Mexican-American singer Selena.  I did remember when she was killed, but had seen her at the time as a minor pop singer in whom mostly young people would be interested.

Needless to say, the article was heartbreaking, but more than that, it piqued my interest anew.

A few days later I took Sterling and Kelly to Wal-Mart, and chanced to pass by the rack featuring Spanish music.  There was a double album of Selena's hits and it wasn't expensive, so I bought it.

Wow!  I fell in love on the first song.  What a voice! What presence! What sureness! What musicianship!  I was hooked.  Soon Selena was booming on my car speakers wherever I went, and the joy of listening to her irrepresible renditions filled my days.

Kelly and Sterling liked it, too.  I told them about Selena and reminded them we had a movie about her in the library, but warned that it ended very sadly.

Kelly watched the movie that night, and asked me lots of questions the next day.  We've played the songs and talked a lot more about things I imagine a lot of people would really like to know: Why did that woman shoot Selena?  Is Selena in heaven now?  How old would she be now?  Is her husband still sad?

The answers I gave her?  "We'll never really know."  "I'm certain she is."  "38 years old."  "Yes, I'm sure he is, but he got married again, and guess what--he has a little boy with Down syndrome just like you!"

Then about two weeks ago I came out of my office and what do I hear but "...'Amor prohibido murmuran por las calles'..."  Selena!

"Who's playing Selena?" I ask.

"Me," says Natalie, "I love her."

Now all the Ranchers can talk about is Selena.  DVD sales are booming, Ranchers are clamoring for me to teach them her songs in Spanish.  We sing, we dance, we boogie to Selena.

Often the Ranchers want to talk about the unbelievable tragedy of her death and our hearts break anew.  How is it even possible that so much aliveness could be taken away? 

But I remind them that the light shines in the darkness, and the darkness will never overcome it.

And we best honor Selena by holding onto that, and by joyfully letting the gifts she left behind fill our lives.



Photo:  Selena, pictured in April 1994, for her Amor Prohibido Tour

Fields of Dreams

What an amazing April—the best Texas has to offer. Cool nights, warm days, a real spring as opposed to our usual “wham bam thank you m’am” transition from winter to summer.

Don, Phil, Jerry and I went for lunch Friday at the East Side Café in Austin to look at Dorsey’s gardens in the back where she grows herbs and vegetables, all of which are consumed by happy diners in the restaurant. We were on a field trip (no pun intended) to get ideas for our own gardens.

After we got back to the Ranch we walked the fields behind the Learning Center, plotting out where to put the Chicken Hilton, and our own herb and vegetable gardens.

Talk about inspiration! I hectored Jerry into working Saturday morning to clear the spot for the Benedict House garden, replacing the Giant House-Eating Double Palm Plant that had grown to monstrous proportions and ousted to a different location.

Both of us weeded and dug and moved rock on Saturday. We planted Sunday and by evening had 16 squares planted of the “Front 40” (square feet, that is). (Being as we’re officially elderly now we thought we’d jettison the Jeavons double-dug beds and try out Square Foot Gardening for a change.)

It was great fun and we were proud and happy, if tired and sore.

Then coming to work this morning first thing I noticed was that the Chicken Hilton had been transferred from the warehouse, where it was built, to the field where our gardens, the chickens, the berries (uh oh…do chickens like berries?)…anyway, where it all will shortly be.

I took some pics of Mike putting the finishing touches on the Hilton. A few minutes later Don went charging one way on a red tractor while Pat charged in the opposite direction on another red tractor.

Don hailed me as I headed for the barn and suggested we go to the horse pasture and get some pictures of Cheena and Austin cavorting amongst the wildflowers “without the other horses around to make them squirrely.”

Alas, they were pretty determined to be squirrely anyway, but it was fun. (That's Austin taking off.)

Later Don let me know that the barn and garden crews were clearing the first space in the garden area so I shot out with the camera to record this momentous event.

This is truly the start of something big. If you came to the Gala, you heard us talk about Operation Independence, and we’re serious about this. Eggs, beef, veggies, fruit trees—we’ve got room to produce it all.

Come, and see.

Still Life

Waiting for the carpet cleaners to arrive, I was shuffling through boxes of photos and albums in our home office in Benedict House.

Naturally, I got distracted and soon was flipping through mementos of our former lives.

Dang! We were a pretty darned good-looking pair back in the day, despite eyeglasses the size of pie pans and clothing styles just recovering from the 70s.

Still, as Kelly always asks when she sees pictures of the younger me, “What happened?”

Well, life is what happened. We are old now, and—to quote the poet—covered with our lives.

But appearances are deceiving, as we know. We didn’t feel especially beautiful or handsome when those pictures were snapped, and we don’t feel especially old now that we are.

The reality of any stage of life is what’s going on inside, not what the camera catches. Shortly after those pictures were taken, Kelly was born and we learned that lesson big time.

Right after getting home from the hospital, our new friends Don and Jo Rettberg, parents of an eight-year-old boy with Down syndrome, advised us not to check out books on the subject from the library.

“They’re all depressing, and most of what they say isn’t even true,” said Jo.

But of course we checked the books out anyway, including one on “mental defects” that featured a young woman with Down syndrome, stripped naked, standing bewildered and alone under the harsh flash of the camera, glancing sideways down at the floor.

Welcome to the world, baby girl.

It could be that Down Home Ranch was conceived the moment we opened that book to that dreadful page.

Because Jerry and I had learned in the three short days of our baby’s new life that a diagnosis does not and never will describe a human being, and that the love burning in our hearts would be the true measure of Kelly’s life, and of ours.

That one photo kindled in us the fierce resolve to go anywhere and do anything to protect our girl and give her the life and the dignity she deserved.

And the young woman in the photo?

She has almost certainly passed on by now, but my heart still grieves for her.

How I wish I could let her know that we remember her, that we know how much more there was to her and to her life than that wretched photo, and how much she came to mean to us.

And that in part because of her, we built a place of beauty, and love, and dignity for those who followed.

The Evidence of Things Unseen...

We had guests this past weekend at the Ranch, the mom and dad of an 11-year old boy with disabilities. They are in the early stages of building a “place like Down Home Ranch” for their son and others like him.

Sound familiar? Does to us! We are contacted all the time (two to three times a week, in fact) by parents dedicated—sometimes desperate—to locking in a good life for their son or daughter as they age.

Jim and Laura’s story is similar yet different from ours. Their boy does not have Downs. Instead he presents a puzzling set of neurological mysteries that don’t settle him easily into any particular category.

Not everything about Jimmy is a mystery, though. His love for the family farm is deep and obvious. Just as obvious is Jim and Laura’s determination to see that Blue Ridge Community Farm gets built and fulfills the dreams promises they hold for it.

So impressed were we by how far this couple has come that we did something we’ve never done before—devoted an entire weekend to spend with them. We needed that and more. I commented to Laura Sunday evening that they must feel like Alsatian geese—you know, the ones they funnel-feed.

So much information, so little time! But of course the mentoring will continue. So easy these days in our seemingly virtual lives!

Most often when someone says to me, “I want to do what you’ve done with Down Home Ranch,” I reply only half-facetiously, “No. Trust me. You don’t.”

I’m only half kidding when I say I don’t really know how Down Home Ranch happened to come into being. Jerry and I regularly wake up, walk outside, and look out on the Village, where the Ranchers are stirring and getting ready for their day, and we look at each other in amazement.

Usually Jerry will say puckishly, “Whose idea was this anyway?”

What a journey it’s been. If we’d had half an idea of how hard it would be we would never have been brave enough to step out in faith and do it. But God graciously led us on day by day. Over the past 20 years so many amazing people have come into our lives, offering the best of what they have and who they are.

Parents, campers, counselors, staff and board members—what a continuous inspiration they have been! And oh, how we have needed that inspiration. It’s been a long, hard, exhilarating, sometimes heartbreaking, journey.

This weekend we saw the Jerry and Judy of 1990 in Jim and Laura—standing on the precipice of a grand adventure—a vision quest to slay the dragons that threaten to devour the ones we love.

And we just know that Blue Ridge Community Farm will someday be a reality, that Jimmy and his friends will care for the animals, gather the eggs, and will know that life is good.

Photo: Laura meets Blossom, first resident of Down Home Ranch